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Pediatric advance care planning
Bernard J Hammes1, Judy Klevan, Michelle Kempf
1Department of Medical Humanities, Gundersen Lutheran Medical Foundation, 1900 South Avenue, La Crosse, WI 54601-5494, USA. bjhammes@gundluth.org
Insights
Pediatric advance care planning helped most families ensure their child received the best care, improving quality of life and reducing suffering. This process supported families through difficult end-of-life decisions.
Area of Science:
- Pediatric Palliative Care
- Medical Ethics
- Family-Centered Care
Background:
- Pediatric advance care planning (ACP) is crucial for children with progressive disorders.
- Understanding the process, population, and outcomes of ACP in pediatrics is essential.
Purpose of the Study:
- To describe the process and population involved in pediatric advance care planning.
- To discuss the outcomes and parental perceptions of ACP for children.
Main Methods:
- Retrospective review of ethics consultations for pediatric patients with advance directives.
- Analysis of medical records for patient conditions and care received.
- Qualitative interviews with parents to explore their experiences with ACP.
Main Results:
- Seventeen children with progressive, non-cancerous disorders were included.
- Advance directives were followed in most cases (8/9).
- Thirteen parents reported ACP benefited their child and family, enhancing quality of life and avoiding suffering.
Conclusions:
- Pediatric advance care planning is beneficial for families, ensuring quality of life and minimizing suffering.
- Despite the difficulty of discussing end-of-life issues, parents found ACP helpful.
- Community concerns regarding advance directives were rarely raised.
Objective:
This study describes the process and population involved in pediatric advance care planning at one Midwest medical center. The outcomes and the parents' perceptions of this planning are also discussed.
Methods:
Pediatric patients with advance directives were identified from ethics consultations records. Information about the type of advance directive, the patient's medical condition and care received was obtained from the medical records. Parents of the children were then contacted and interviewed in regard to the advance care planning process done for their child. The interviews were audiotaped and transcribed. Transcribed interviews were reviewed and themes were identified.
Results:
Seventeen children from 16 families were included in the study. Almost all of the patients had progressive disorders other than cancer. Of the 17 children, 9 are deceased, 7 died at home and 2 died at a hospital. Eight of the children's advance directives were followed during the dying process, while 1 was not. Thirteen parents were interviewed. Twelve stated that the process of advance care planning benefited their children and their family. Rarely, individuals in the community raised concerns about the child's advance directive.
Conclusions:
Even though the topic of their child's death is difficult, the majority of the interviewed parents found the advance care planning process for the child helpful because it assured the best care for the child, including preserving their child's quality of life and avoiding unnecessary suffering.
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Patient outcomes reflect the patient's response to the goal rather than what the nurse aims to achieve. Terminology should be observable and measurable to avoid the reader's interpretation. The desired outcome should be realistic and achievable in the designated care timeframe. Expected outcomes should align with adjunctive therapies. The outcome should enhance care evaluation by...